NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2025
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2025-01-01 to 2025-12-31
- Filed
- 2026-04-23
- IRS object ID
- 202631139349300018
- Schema version
- 2025v4.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2026-04-23T09:15:55-05:00 | ReturnTs |
| Tax Period End | 2025-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 470900880 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CALIBRE CPA GROUP PLLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 7501 WISCONSIN AVENUE SUITE 1200 | AddressLine1Txt |
| Address Line2 | WEST | AddressLine2Txt |
| City | BETHESDA | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20814 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2025-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 953018799 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL TUBEROUS SCLEROSIS | BusinessNameLine1Txt |
| Business Name Line2 | ASSOCIATION | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARI L ROSBECK | PersonNm |
| Person Title | PRESIDENT & CEO | PersonTitleTxt |
| Phone | 3015629890 | PhoneNum |
| Signature | 2026-04-23 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ERIN CRANMER | PreparerPersonNm |
| PTIN | P01712644 | PTIN |
| Phone | 2023319880 | PhoneNum |
| Preparation | 2026-04-23 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2025 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | KARI L ROSBECK | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $10,201,372 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.TSCALLIANCE.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1975 | FormationYr |
| Legal Domicile State | CA | LegalDomicileStateCd |
| Activity Or Mission | TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT. | ActivityOrMissionDesc |
| Voting Members Governing Body | 30 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 30 | VotingMembersIndependentCnt |
| Total Employee | 26 | TotalEmployeeCnt |
| Total Volunteers | 385 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $7,048,334 | PYContributionsGrantsAmt |
| CY Contributions Grants | $6,133,143 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $2,105,029 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $2,653,098 | CYProgramServiceRevenueAmt |
| PY Investment Income | $52,809 | PYInvestmentIncomeAmt |
| CY Investment Income | $23,937 | CYInvestmentIncomeAmt |
| PY Other Revenue | $794,723 | PYOtherRevenueAmt |
| CY Other Revenue | $997,142 | CYOtherRevenueAmt |
| PY Total Revenue | $10,000,895 | PYTotalRevenueAmt |
| CY Total Revenue | $9,807,320 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $730,927 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $1,040,281 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $3,153,884 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $3,268,560 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,233,462 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $4,775,207 | PYOtherExpensesAmt |
| CY Other Expenses | $4,824,961 | CYOtherExpensesAmt |
| PY Total Expenses | $8,660,018 | PYTotalExpensesAmt |
| CY Total Expenses | $9,133,802 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $1,340,877 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $673,518 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $17,254,701 | TotalAssetsBOYAmt |
| Total Assets EOY | $18,024,174 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $1,888,588 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $1,975,768 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $15,366,113 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $16,048,406 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $5,592,767 | ExpenseAmt |
| Grant | $1,040,281 | GrantAmt |
| Revenue | $2,424,150 | RevenueAmt |
| Desc | RESEARCH PROGRAM STIMULATES AND SUPPORTS BASIC, TRANSLATIONAL, AND CLINICAL RESEARCH ON THE VARIOUS MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX (TSC) TO FURTHER THE DEVELOPMENT OF CLINICAL THERAPIES AND, ULTIMATELY, A CURE FOR TSC. DIRECTED BY STEVEN L. ROBERDS, PHD, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH PROGRAM BUILDS AND FOSTERS COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS BY COLLECTING AND DISTRIBUTING TSC NATURAL HISTORY DATA AND BIOSAMPLES, THROUGH COLLABORATIVE PRECLINICAL AND CLINICAL RESEARCH PROGRAMS, AND BY HOSTING BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES.SINCE 1984, THE TSC ALLIANCE HAS INVESTED MORE THAN $44 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $21.6 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $6.2 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $14.3 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $2.3 MILLION INTO THE CLINICAL RESEARCH CONSORTIUM AND CLINICAL RESEARCH NETWORK. GRANT AND FELLOWSHIP APPLICATIONS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF CAREGIVERS OR ADULTS AFFECTED BY TSC FOR POTENTIAL IMPACT ON THE LIVES OF THOSE AFFECTED BY TSC; (2) THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS EVALUATES THE GRANT REVIEW COMMITTEE'S RECOMMENDATIONS AND THE RELEVANCE OF THE APPLICATIONS TO THE TSC ALLIANCE'S FUNDING PRIORITIES; AND (3) THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR FUNDING. FOR A COMPLETE LIST OF CURRENTLY FUNDED PROJECTS AND AN ARCHIVE OF PAST AWARDEES, PLEASE VISIT TSCALLIANCE.ORG/RESEARCHERS/GRANTS-FUNDING/.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE (NHD) CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER HIS/HER LIFETIME. THE DATABASE SERVES AS A RESOURCE OF INFORMATION THAT HELPS TSC RESEARCHERS BETTER UNDERSTAND THE PROGRESSION OF THE DISEASE, DESIGN HYPOTHESIS-DRIVEN QUESTIONS TO HASTEN THE DISCOVERY OF NEW TREATMENTS AND IDENTIFY PERSONS WITH TSC WHO ARE ELIGIBLE TO PARTICIPATE IN RESEARCH STUDIES. AS OF DECEMBER 2025, THE NATURAL HISTORY DATABASE CONTAINED 2,932 PARTICIPANTS ENROLLED IN THE PROJECT FROM AMONG 24 TSC CLINIC SITES AND THROUGH THE TSC ALLIANCE. THE TSC ALLIANCE PROVIDES FUNDING TO PARTICIPATING CLINICS TO PERFORM DATA ENTRY, MONITORS THE INTEGRITY OF THE DATABASE, AND MAKES DATA AVAILABLE TO INVESTIGATORS TO ANSWER SPECIFIC RESEARCH QUESTIONS AND IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL TRIALS AND STUDIES BUILDING UPON THE NATURAL HISTORY DATABASE, THE TSC BIOSAMPLE REPOSITORY IS A TSC ALLIANCE-DIRECTED PROJECT INITIATED IN 2014 THAT WILL IMPACT RESEARCH FOR DECADES TO COME. THE TSC ALLIANCE'S SCIENCE AND MEDICAL COMMITTEE IDENTIFIED THIS AS A GAP THAT CAN ONLY BE FILLED EFFECTIVELY WITH LEADERSHIP OF THE TSC ALLIANCE, GUIDED BY A STEERING COMMITTEE OF CLINICIANS, RESEARCHERS AND COMMUNITY MEMBERS. HIGH-QUALITY BIOSAMPLES SUCH AS BLOOD, DNA, AND TISSUES LINKED TO DETAILED CLINICAL DATA ARE CRITICAL FOR RESEARCHERS TO UNDERSTAND WHY TSC IS SO DIFFERENT FROM PERSON TO PERSON. SAMPLES IN THE REPOSITORY ARE LINKED TO DETAILED CLINICAL DATA IN OUR EXISTING TSC NATURAL HISTORY DATABASE AND ARE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE. SAMPLES ARE HOUSED AT AND DISTRIBUTED FROM THE VAN ANDEL INSTITUTE IN GRAND RAPIDS, MI, UNDER CONTROL OF THE TSC ALLIANCE. AS OF DECEMBER 2025, THE BIOSAMPLE REPOSITORY HAS ACQUIRED 3,117 BLOOD, BUCCAL (CHEEK) SWAB, OR TISSUE SAMPLES. SINCE INCEPTION, 4,036 PORTIONS OF SAMPLES HAVE BEEN DISTRIBUTED TO 57 DISTINCT RESEARCHERS FOR 63 DISTINCT PROJECTS.THE ORGANIZATION CONTINUES TO GROW THE BIOSAMPLE REPOSITORY BY COLLECTING BLOOD SAMPLES ANNUALLY FROM PARTICIPANTS WHO VOLUNTEER TO DO SO, ENABLING RESEARCHERS TO STUDY CHANGES IN PROTEINS AND OTHER MOLECULES IN THE BLOOD OVER TIME; ADDING ADDITIONAL TSC CLINICS AS PARTICIPATING BIOSAMPLE REPOSITORY COLLECTION SITES; AND COLLECTING BLOOD USING MOBILE PHLEBOTOMY, ENABLING PEOPLE TO DONATE SAMPLES REGARDLESS OF WHERE THEY LIVE IN THE US AND WHETHER THEY ARE SEEN AT A TSC CLINIC. SINCE THE INCEPTION OF OUR MOBILE PHLEBOTOMY INITIATIVE, WE HAVE ACQUIRED 635 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED THREE SEED GRANTS IN 2025, TOTALING $57,952.64, TO LABS THAT SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES.THE TSC ALLIANCE'S WHOLE-GENOME SEQUENCING (WGS) INITIATIVE USING DNA FROM BLOOD SAMPLES IN OUR BIOSAMPLE REPOSITORY HAS SEQUENCED 242 SAMPLES SINCE INCEPTION, WITH AN ADDITIONAL 48 SAMPLES IN PROCESS. THIS INITIATIVE SUPPORTS CLINICAL VALIDATION OF VARIANTS FOUND VIA WGS IN EITHER THE TSC1 OR TSC2 GENE, AND GENETIC RESULTS ARE OFFERED BACK TO PARTICIPANTS ALONG WITH A GENETIC COUNSELING SESSION FREE OF CHARGE TO THE FAMILY TO HELP THEM BETTER UNDERSTAND THEIR UNIQUE TSC DIAGNOSIS AND PROVIDE VALUABLE INFORMATION FOR FUTURE DECISION MAKING SUCH AS FAMILY PLANNING.IN DECEMBER 2021, THE TSC ALLIANCE ADDED THE TSC SELF-REPORT PORTAL TO THE TSC NATURAL HISTORY DATABASE. THIS PORTAL PERMITS THE COLLECTION OF PATIENT-REPORTED OUTCOMES ON HOW TSC AFFECTS INDIVIDUALS AND FAMILIES, WHICH WILL COMPLEMENT MEDICAL DATA IN THE NATURAL HISTORY DATABASE. THE PURPOSE OF THIS INITIATIVE IS TO HELP THE TSC ALLIANCE AND TSC RESEARCHERS BETTER UNDERSTAND THE PERSPECTIVE OF THOSE AFFECTED BY TSC TO DEVELOP TOOLS TO MEASURE IMPROVEMENT IN AREAS MOST IMPORTANT TO THE TSC COMMUNITY. EVENTUALLY, THESE MEASUREMENTS CAN BE USED TO IDENTIFY ENDPOINTS FOR CLINICAL TRIALS AND EVIDENCE-BASED GUIDELINES FOR TREATMENT.ONE OF THE MOST IMPACTFUL ASPECTS OF TSC ON THE QUALITY OF LIFE FOR PEOPLE LIVING WITH TSC IS TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND). THEREFORE, THE TSC ALLIANCE'S FIRST USE OF THE PORTAL IS THROUGH COLLABORATION WITH THE TANDEM PROJECT (EMPOWERING FAMILIES THROUGH TECHNOLOGY: A MOBILE-HEALTH PROJECT TO REDUCE THE TAND IDENTIFICATION AND TREATMENT GAP) BY ALLOWING THE COMMUNITY TO COMPLETE THE SELF-QUANTIFIED TAND CHECKLIST (TAND-SQ). AT THE END OF 2025, 114 INDIVIDUALS HAD COMPLETED THE TAND-SQ THROUGH THE SELF-REPORT PORTAL.THE TSC ALLIANCE LAUNCHED THE TSC PRECLINICAL CONSORTIUM IN 2015 TO HELP ADVANCE MORE DRUG CANDIDATES INTO CLINICAL TESTING. TO ACHIEVE THIS END, THE PRECLINICAL CONSORTIUM PROVIDES THE INFRASTRUCTURE TO FOSTER COLLABORATION BETWEEN ACADEMIA AND PHARMACEUTICAL INDUSTRY RESEARCHERS AND FOR ACCESS TO RESOURCES DESIGNED TO HELP FACILITATE DRUG DEVELOPMENT IN TSC. COLLABORATING WITH THE TSC COMMUNITY, THE CONSORTIUM HAS IDENTIFIED AND IMPLEMENTED ROBUST AND REPRODUCIBLE CELL AND ANIMAL MODELS FOR TSC MANIFESTATIONS INCLUDING TUMORS, EPILEPSY, AND TAND. IN 2022, THE TSC ALLIANCE ENTERED INTO A PARTNERSHIP WITH THE LAM FOUNDATION TO ADD LAM MOUSE MODELS TO THE PRECLINICAL CONSORTIUM. THE TSC ALLIANCE HAS LICENSES TO USE SPECIFIC TSC MOUSE MODELS FOR EXPERIMENTS CARRIED OUT BY THE PRECLINICAL CONSORTIUM, AND ALL MOUSE LICENSE AGREEMENTS INCLUDE THE RIGHTS FOR THE TSC ALLIANCE TO PERFORM EXPERIMENTS UNDER CONTRACT FOR COMMERCIAL ENTITIES. THIS ENSURES DATA GENERATED BY THE PRECLINICAL CONSORTIUM CAN BE USED TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS BY COMMERCIAL ENTITIES AS WELL AS ACADEMIC INVESTIGATORS. EXPERIMENTS ARE EXECUTED AT PARTNERING RESEARCH INSTITUTIONS TO ENSURE CONSISTENCY IN TESTING, DATA ACQUISITION AND INTERPRETATION. EPILEPSY STUDIES ARE CONDUCTED AT PSYCHOGENICS (US), AND THE TUMOR GRAFT MODEL AND CELL-BASED ASSAYS ARE CONDUCTED AT PORSOLT (FRANCE). THE VAN ANDEL RESEARCH INSTITUTE, A NON-PROFIT RESEARCH ORGANIZATION, MAINTAINS A COLONY OF TSC2+/- AJ MICE AND F L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM. THE PRECLINICAL CONSORTIUM INVITES COMPOUND NOMINATIONS FROM ACADEMIC AND INDUSTRY RESEARCHERS TO CONTINUE TO REFRESH OUR PIPELINE BASED ON THE LATEST DATA AND NOVEL IDEAS. THE NOMINATIONS ARE PEER REVIEWED BY CONSORTIUM MEMBERS AND PRIORITIZED BY THE PRECLINICAL CONSORTIUM STEERING COMMITTEE FOR FUNDING BY THE TSC ALLIANCE. IF THE TSC ALLIANCE FUNDS THE STUDY, THE DATA ARE SHARED WITH THE CONSORTIUM FOR TRANSPARENCY AND STIMULATION OF ADDITIONAL HYPOTHESES. A MEMBERS MEETING IS HELD ANNUALLY TO KEEP MEMBERS ENGAGED AND ALIGNED ON THE CONSORTIUM'S STRATEGY AND PRIORITIES. PARTNERSHIP WITH PHARMACEUTICAL COMPANIES IS AN IMPORTANT ASPECT OF THE CONSORTIUM, AS THESE ORGANIZATIONS HAVE THE INFRASTRUCTURE TO EFFICIENTLY MOVE PRECLINICAL RESEARCH FINDINGS TO CLINICAL TESTING AND EVENTUALLY COMMERCIAL DISTRIBUTION. THE PRECLINICAL CONSORTIUM ENDED 2025 WITH 12 ACTIVE INDUSTRY PARTNERS, INCREASING THE TOTAL NUMBER TO 31 INDUSTRY PARTNERS SINCE 2016. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $941,019 | ExpenseAmt |
| Desc | SUPPORT SERVICES IS DEDICATED TO SUPPORTING INDIVIDUALS AND FAMILIES AFFECTED BY TSC THROUGH OUTREACH PROGRAMS, SUPPORT SERVICES, IMPROVED MEDICAL ACCESS, AND EDUCATIONAL RESOURCES. IN 2025, THE TSC ALLIANCE CONTINUED TO ADVANCE ITS COMMUNITY SUPPORT MODEL THROUGH THE COMMUNITY LEADERSHIP HUB, A PLATFORM TO CONNECT, MANAGE, AND RECOGNIZE ITS 147 ACTIVE VOLUNTEERS. ACROSS 14 COMMUNITY REGIONS, THESE VOLUNTEERS SUSTAIN A COORDINATED NETWORK THAT STRENGTHENS SUPPORT FOR INDIVIDUALS AND FAMILIES AFFECTED BY TSC.THE COMMUNITY PROGRAMS TEAM INVESTED MORE THAN 1,443 TRAINING HOURS TO OUR LEADERS, TO ENSURE THEY WERE WELL EQUIPPED TO SUPPORT AND EMPOWER THE TSC COMMUNITY. AS A RESULT, WE PROVIDED 6,613 PEER-TO-PEER SUPPORT ENGAGEMENTS AND FACILITATED 102 SCHOOL MEETINGS, WHICH INVOLVED TSC 101 TRAINING AND IEP CONSULTATIONS. IN ADDITION, SIX "ASK AN ADVOCATE" WEBINARS ATTRACTED 490 REGISTRANTS. THE COMMUNITY PROGRAMS TEAM COLLABORATED WITH KEY STAFF TO HOST THE 2025 TRANSITION WEBINAR SERIES WITH 268 LIVE ATTENDEES AND GARNERED 267 RECORDED VIEWS AS OF DECEMBER 31, 2025. THE TSC ALLIANCE HOSTED THREE EDUCATIONAL TSC REGIONAL CONFERENCES IN WALTHAM, MA, IOWA CITY, IA (WITH THE OPPORTUNITY TO PARTICIPATE VIRTUALLY), AND LOS ANGELES, CA WITH A COMBINED TOTAL OF 210 IN PERSON ATTENDEES AND 40 VIRTUALLY (IOWA). THE TSC ALLIANCE'S TSC NAVIGATOR IS AN EASY-TO-USE, INTERACTIVE ONLINE TOOL TO HELP GUIDE INDIVIDUALS AND FAMILIES THROUGH THE COMPLEXITIES OF TSC ACROSS THE LIFESPAN, PROACTIVELY MANAGE THEIR CARE, AND LIVE THEIR FULLEST LIVES. USERS CAN ACCESS INFORMATION BASED ON THE AGE OF ONE'S DIAGNOSIS, SUCH AS PRENATAL, CHILDHOOD, OR ADULT, TO HELP DETERMINE WHICH STEPS WILL HELP EMPOWER THEM THROUGHOUT THEIR INDIVIDUAL JOURNEYS. IN 2024, AS PART OF THE TSC ALLIANCE'S WEBSITE REDESIGN, TSC NAVIGATOR WAS EXPANDED ACROSS MORE PAGES ON THE WEBSITE. TSC NAVIGATOR CONTENT HAD 89,932 PAGE VIEWS IN 2025 FROM 55,274 USERS. SUPPORT NAVIGATORS ASSISTED 317 FAMILIES INCLUDING 17 ONE-HOUR LONG SUPPORT NAVIGATOR CALLS. THREE INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2025, DOWN FROM 9 IN 2024, CONSISTENT WITH THE GOAL OF PROACTIVELY HELPING PEOPLE AVOID MEDICATION ACCESS ISSUES. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $418,184 | ExpenseAmt |
| Desc | PUBLIC HEALTH EDUCATION INCREASES AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES; THESE EFFORTS ALSO WORK TO HELP REACH THE UNDIAGNOSED AND NEWLY DIAGNOSED. DURING 2025, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 18,500 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED TWO EPISODES WITH 1,970 TOTAL LISTENS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 16,227 RECIPIENTS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH A MONTHLY AVERAGE OF 25,303 PAGE VIEWS. THE TSC ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS PRIVATE FACEBOOK TSC DISCUSSION GROUP BOASTS MORE THAN 11,737 MEMBERS FROM AROUND THE WORLD, WHILE ITS FACEBOOK PAGE HAS 12,128 FOLLOWERS, LINKEDIN HAS 2,797 FOLLOWERS, INSTAGRAM HAS 4,436 FOLLOWERS AND ITS YOUTUBE CHANNEL HAS 9,010 SUBSCRIBERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE 13TH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATION'S VARIOUS NEWS RELEASES, DIGITAL ADS, AND SOCIAL MEDIA OUTREACH EFFORTS CULMINATED IN MORE THAN 800 MILLION CUMULATIVE IMPRESSIONS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $315,712 | ExpenseAmt |
| Desc | GOVERNMENT RELATIONS EFFORTS FOCUS ON INCREASING FEDERAL AND STATE APPROPRIATIONS FOR TSC RESEARCH, RAISING AWARENESS, AND COLLABORATING WITH GOVERNMENT PARTNERS TO DRIVE TSC RESEARCH FORWARD AND IMPROVE CLINICAL CARE AND TREATMENT OPTIONS FOR INDIVIDUALS WITH TSC. ON THE STATE LEVEL, THE TSC ALLIANCE ADVOCATED FOR STATE FUNDING FOR TSC CENTERS IN ALABAMA, MISSOURI, AND MARYLAND, RESULTING IN AT LEAST $1.275 MILLION IN STATE APPROPRIATIONS. THE 2025 MARCH ON CAPITOL HILL WAS HELD ON MARCH 5 WITH CONGRESSIONAL MEETINGS TAKING PLACE THROUGH MID-MARCH. MORE THAN 130 PEOPLE PARTICIPATED IN OVER 367 IN-PERSON AND VIRTUAL MEETINGS. OUR HOUSE DEAR COLLEAGUE LETTER FOR FY26 WAS CO-SPONSORED BY REPRESENTATIVES FITZPATRICK (R-PA) AND RASKIN (D-MD) AND CLOSED WITH 163 SIGNERS. THE SENATE DEAR COLLEAGUE LETTER WAS CO-SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) AND CLOSED WITH 35 SIGNERS.CONGRESS PASSED A CONTINUING RESOLUTION FOR FY25 THAT INCLUDED A 57% CUT TO THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP). THIS CUT WAS NOT MADE UNIFORMLY ACROSS ALL CDMRPS AND UNFORTUNATELY RESULTED IN NO FUNDING ALLOCATION TO THE TSCRP IN FY25 WHICH ENDED SEPTEMBER 30, 2025. HOWEVER, TSC WAS ADDED AS ONE OF THE 56 QUALIFYING TOPIC AREAS UNDER THE PEER REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP). $150 MILLION WAS APPROPRIATED TO THIS PROGRAM IN FY25 AND THE INCLUSION OF TSC ENABLED TSC RESEARCHERS TO APPLY. THE FY26 DEFENSE BILL REINSTATED FUNDING FOR THE TSCRP AND INCLUDED A $2 MILLION INCREASE GOING FROM $8 MILLION IN FY24 TO $10 MILLION. TOTAL FUNDING FOR THE TSCRP HAS BEEN $131 MILLION SINCE 2002, ADDITIONALLY, FY26 ALSO RESULTED IN REPORT LANGUAGE INCLUDED IN THE LABOR, HEALTH, AND HUMAN SERVICES APPROPRIATION FOR THE NATIONAL INSTITUTES OF HEALTH (NIH) REQUIRING NO LESS THAN $30 MILLION BE SPENT ON TSC RESEARCH ACROSS NIH INSTITUTES. IN 2024, TSC CATEGORIAL SPENDING AT NIH WAS $21 MILLION (A $9 MILLION INCREASE). RESEARCH PERFORMED THROUGH THIS PROGRAM HAS RECENTLY LED TO ADDITIONAL CLINICAL TRIALS INCLUDING DETERMINING IF IMATINIB, A DRUG FDA-APPROVED FOR CANCER, CAN SAFELY IMPROVE LEVELS OF VEGF-D, A BIOMARKER OF LYMPHANGIOLEIOMYOMATOSIS (LAM), A LIFE-THREATENING LUNG MANIFESTATION OF TSC, FUNDED IN FY2013; TWO TSCRP AWARDS IN FY2012 AND FY2015 THAT ENABLED GENERATION OF A POTENTIAL APPROACH FOR GENE THERAPY OF TSC, WHICH HAS SHOWN PROMISING RESULTS IN A MOUSE MODEL OF TSC TUMORS IN THE BRAIN; A MULTI-SITE CLINICAL TRIAL TESTING THE EFFICACY OF AN EXPERIMENTAL TOPICAL RAPAMYCIN CREAM TO TREAT THE DISFIGURING FACIAL TUMORS, CALLED FACIAL ANGIOFIBROMAS, CAUSED BY A TSC FUNDED AWARD IN FY2010 THAT LED TO THE THIRD FDA-APPROVED DRUG TO TREAT TSC IN APRIL 2022; AND A CLINICAL RESEARCH NETWORK THAT WAS CREATED TO TEST POTENTIAL NEW THERAPIES, TO VALIDATE BIOMARKERS, AND TO LEARN THE NATURAL HISTORY OF LEADING TO A CLINICAL TRIAL FUNDED IN FY2012. DATA OBTAINED FROM AN FY2010 TSCRP CLINICAL RESEARCH AWARD TO DEFINE EARLY AUTISM PREDICTORS IN TSC AND AN FY2014 TSCRP AWARD FOR A PILOT CLINICAL TRIAL IS BEING TESTED IN A LARGE, NIH-FUNDED CLINICAL TRIAL LOOKING AT THE EFFECTIVENESS OF A BEHAVIORAL INTERVENTION STRATEGY, JASPER, TO IMPROVE OUTCOMES IN CHILDREN WITH AUTISM. THE TSCRP HAS ALSO FUNDED RESEARCH TO DEVELOP ANIMAL MODELS OF TSC THAT HAVE SEIZURES, ENABLING A BETTER UNDERSTANDING OF THE ETIOLOGY OF TSC. BASED ON DATA FROM TSCRP-FUNDED ANIMAL MODELS OF TSC THAT HAVE SEIZURES AND SHARE PATHOLOGY RELATED TO THAT OF TRAUMATIC BRAIN INJURY, AN INDUSTRY-SPONSORED CLINICAL TRIAL DEMONSTRATED THE EFFECTIVENESS THE MTOR INHIBITOR, EVEROLIMUS, AT TREATING EPILEPSY IN MANY INDIVIDUALS WITH TSC. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP.GLOBAL OUTREACH WORKS TO ADDRESS UNMET NEEDS WITHIN THE GLOBAL TSC COMMUNITY. THE PROGRAM PROVIDES THE OPPORTUNITY FOR THE TSC ALLIANCE TO SHARE EXPERIENCES AND ASSIST IN THE START-UP OF SUPPORT OF TSC-RELATED ORGANIZATIONS IN OTHER COUNTRIES. A GLOBAL ALLIANCE IS A STRUCTURED GROUP OF EMPOWERED AND CARING VOLUNTEERS WHO WORK CLOSELY WITH THE TSC ALLIANCE TO FACILITATE LOCAL CONNECTIONS FOR INDIVIDUALS AND FAMILIES AFFECTED BY TSC AND RAISE REVENUE AND AWARENESS WHILE SUPPORTING THE MISSION OF THE ORGANIZATION. THE TSC ALLIANCE HAS FIVE GLOBAL PARTNERSHIPS, INCLUDING TSC ALLIANCE OF ISRAEL, TS CANADA ST, TSC ALLIANCE OF MEXICO, HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TSC ALLIANCE OF INDIA. THE TSC ALLIANCE RECOGNIZES 16 TSC CLINICS IN GLOBAL ALLIANCE COUNTRIES. PROFESSIONAL EDUCATION EXPANDS PROGRAMS TO TARGET RESEARCHERS AND HEALTHCARE PROVIDERS CARING FOR INDIVIDUALS WITH TSC, MEDICAL STUDENTS, GENETIC COUNSELORS AND EDUCATORS TO MINIMIZE THE CONSEQUENCES OF IGNORANCE AND MISINFORMATION. THE TSC ALLIANCE EXHIBITED AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING. STAFF MEMBERS AND A VOLUNTEER SHARED EDUCATIONAL MATERIALS WITH ATTENDEES WHO VISITED THE BOOTH, AND STAFF ATTENDED SCIENTIFIC SESSIONS AND HELD MANY MEETINGS WITH ACADEMIC AND INDUSTRY PARTNERS. STAFF ALSO PARTICIPATED IN THE TSC SPECIAL INTEREST GROUP SESSION, AND THE TSC ALLIANCE HOSTED MORE THAN 100 PEOPLE AT A RECEPTION WHICH FEATURED A TESTIMONY BY A TSC FAMILY SHARING HOW THEIR LIVES HAVE BEEN IMPACTED BY TSC. TSC ALLIANCE STAFF ALSO PRESENTED A SCIENTIFIC POSTER AT THE ANNUAL SOCIETY FOR NEUROSCIENCE MEETING AND ATTENDED THE BIENNIAL LAMPOSIUM CONFERENCE. THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 24 PROFESSIONAL MEETINGS IN 2025 INCLUDING RESEARCH AMERICA ANNUAL ADVOCACY AWARDS, DEFENSE HEALTH RESEARCH CONSORTIUM MEETING, RAD WORKSHOP, RARE DISEASE INNOVATION AND PARTNERING SUMMIT, MALLINCKRODT ADVISORY MEETING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE), NORD, RDCRN MEETING, CZI WORKSHOP, ANGELMAN SFARI-FAST, TSCI WORKSHOP, CB-PAG ADVISORY BOARD MEETING, ISAN IN PERSON WORKSHOP, AMERICAN THORACIC SOCIETY (ATS) INTERNATIONAL CONFERENCE, THE ATS BOARD OF DIRECTORS MEETING, THE LAMPOSIUM CONFERENCE, THE MONTREAL TSC PROVIDERS CONFERENCE, SFN, RDDC COALITION MEETINGS, ATS PUBLIC ADVISORY ROUNDTABLE (PAR) PLANNING MEETING, CDMRP SENATE MEETING, AND AMERICAN EPILEPSY SOCIETY ANNUAL MEETING. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $315,712 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $7,267,682 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 32 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 26 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 30 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 30 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (1) | MembersOrStockholdersInd |
| Election Of Board Members | Yes (1) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (37 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|---|
| PAUL WAXLAX | |||||||||
| BOARD CHAIR | 5.00 | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| BRITTANY SMITH | |||||||||
| VICE CHAIR | 5.00 | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| MARK SPOTTS | |||||||||
| TREASURER | 5.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |||
| KRISTI LENGYEL | |||||||||
| SECRETARY | 2.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |||
| DEREK BAUER | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JULIE BLUM | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| ANGELIQUE BORDEY | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| FRANCES BRIONES | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| CHIP BURKHALTER | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LISA CARLTON | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| MARK CARROLL | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| SARA CHIEFFO | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| DANIELLE CLARK | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| ANDREW DUFFY | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JUIAN GANGOLLI | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| TANJALA GIPSON | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JONATHAN GOLDSTEIN | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| RICH GOLLUB | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LISA HENSKE | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LESLEY HOLMES | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| SHAFALI JESTE | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| DAVID JOHNSTON | |||||||||
| DIRECTOR | 2.00 | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| BILL JOSEPH | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JESSICA KREFTING | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| PATROSKI LAWSON | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| LAURA MARKS | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| JIM O'HEIR | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| NOOR PANJWANI | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| ANDREW SPERLING | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| VANESSA VAZQUEZ | |||||||||
| DIRECTOR | 2.00 | Yes (X) | $0 | $0 | $0 | ||||
| KARI LUTHER ROSBECK | |||||||||
| PRESIDENT & CEO | 54.00 | 1.00 | Yes (X) | $254,957 | $0 | $32,411 | |||
| JAMIE SAYLOR | |||||||||
| CHIEF FINANCIAL OFFICER | 45.00 | 3.00 | Yes (X) | $143,473 | $0 | $5,338 | |||
| STEVEN ROBERDS | |||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | $256,275 | $0 | $31,072 | Yes (X) | ||||
| DEAN RAGER-AGUIAR | |||||||||
| VICE PRESIDENT, TRANSLATIO | 45.00 | $191,780 | $0 | $33,526 | Yes (X) | ||||
| LISA MOSS | |||||||||
| VICE PRESIDENT, DONOR RELA | 45.00 | $136,007 | $0 | $28,840 | Yes (X) | ||||
| GAIL SAUNDERS | |||||||||
| DIRECTOR, COMMUNITY PROGRAMS | 45.00 | $103,236 | $0 | $15,481 | Yes (X) | ||||
| HEATHER RADTKE | |||||||||
| DIRECTOR, CLINICAL PROGRAMS | 45.00 | $119,764 | $0 | $15,673 | Yes (X) | ||||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,205,492 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $162,341 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 7 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (3 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| PSYCHOGENICS INC | |||||
| 20 GRAMERCY PARK SOUTH | NEW YORK | NY | 10003 | RESEARCH LAB SERVICES | $2,200,089 |
| VAN ANDEL RESEARCH INSTITUTE | |||||
| 333 BOSTWICK AVE NE | GRAND RAPIDS | MI | 49503 | RESEARCH LAB SERVICES | $203,994 |
| CAVAROCCHI RUSCIO DENNIS & ASSOCIATES | |||||
| 600 MARYLAND AVE SW SUITE 220 EAST | WASHINGTON | DC | 20024 | GOVERNMENT RELATIONS | $122,614 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 3 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $29,076 | FederatedCampaignsAmt |
| Membership Dues | $650 | MembershipDuesAmt |
| Fundraising | $1,277,912 | FundraisingAmt |
| Related Organizations | $246,000 | RelatedOrganizationsAmt |
| All Other Contributions | $4,579,505 | AllOtherContributionsAmt |
| Noncash Contributions | $34,500 | NoncashContributionsAmt |
| Total Contributions | $6,133,143 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt | ExclusionExclusionAmt |
|---|---|---|---|---|
| CONTRACT REVENUE | 900099 | $2,344,367 | $2,344,367 | |
| CONFERENCE REVENUE | 900099 | $308,731 | $79,783 | $228,948 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $2,653,098 | TotalProgramServiceRevenueAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $106,512 | TotalRevenueColumnAmt |
| Exclusion | $106,512 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $150,000 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $232,575 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$82,575 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$82,575 | TotalRevenueColumnAmt |
| Exclusion | -$82,575 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $65,736 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,277,912 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $161,477 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$95,741 | TotalRevenueColumnAmt |
| Exclusion | -$95,741 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CHANGE IN INTEREST OF AFFILIATE | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $1,092,883 | TotalRevenueColumnAmt |
| Exclusion | $1,092,883 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $1,092,883 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $9,807,320 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $2,424,150 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $1,250,027 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $703,855 | TotalAmt |
| Program Services | $703,855 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $336,426 | TotalAmt |
| Program Services | $336,426 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $723,527 | TotalAmt |
| Program Services | $451,842 | ProgramServicesAmt |
| Management And General | $104,984 | ManagementAndGeneralAmt |
| Fundraising | $166,701 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,022,696 | TotalAmt |
| Program Services | $1,261,597 | ProgramServicesAmt |
| Management And General | $327,401 | ManagementAndGeneralAmt |
| Fundraising | $433,698 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $58,174 | TotalAmt |
| Program Services | $36,602 | ProgramServicesAmt |
| Management And General | $7,851 | ManagementAndGeneralAmt |
| Fundraising | $13,721 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $271,894 | TotalAmt |
| Program Services | $170,932 | ProgramServicesAmt |
| Management And General | $36,992 | ManagementAndGeneralAmt |
| Fundraising | $63,970 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $192,269 | TotalAmt |
| Program Services | $120,749 | ProgramServicesAmt |
| Management And General | $26,429 | ManagementAndGeneralAmt |
| Fundraising | $45,091 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $32,630 | TotalAmt |
| Program Services | $19,532 | ProgramServicesAmt |
| Management And General | $3,183 | ManagementAndGeneralAmt |
| Fundraising | $9,915 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $24,488 | TotalAmt |
| Program Services | $14,658 | ProgramServicesAmt |
| Management And General | $2,389 | ManagementAndGeneralAmt |
| Fundraising | $7,441 | FundraisingAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $122,256 | TotalAmt |
| Program Services | $73,180 | ProgramServicesAmt |
| Management And General | $11,927 | ManagementAndGeneralAmt |
| Fundraising | $37,149 | FundraisingAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $259,115 | TotalAmt |
| Program Services | $155,101 | ProgramServicesAmt |
| Management And General | $25,279 | ManagementAndGeneralAmt |
| Fundraising | $78,735 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,734 | TotalAmt |
| Program Services | $5,982 | ProgramServicesAmt |
| Management And General | $117 | ManagementAndGeneralAmt |
| Fundraising | $3,635 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $360,933 | TotalAmt |
| Program Services | $197,259 | ProgramServicesAmt |
| Management And General | $14,832 | ManagementAndGeneralAmt |
| Fundraising | $148,842 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $178,549 | TotalAmt |
| Program Services | $65,884 | ProgramServicesAmt |
| Management And General | $18,022 | ManagementAndGeneralAmt |
| Fundraising | $94,643 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $140,054 | TotalAmt |
| Program Services | $87,701 | ProgramServicesAmt |
| Management And General | $18,782 | ManagementAndGeneralAmt |
| Fundraising | $33,571 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $280,506 | TotalAmt |
| Program Services | $229,038 | ProgramServicesAmt |
| Management And General | $3,763 | ManagementAndGeneralAmt |
| Fundraising | $47,705 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $461,043 | TotalAmt |
| Program Services | $425,900 | ProgramServicesAmt |
| Management And General | $7,459 | ManagementAndGeneralAmt |
| Fundraising | $27,684 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $132,527 | TotalAmt |
| Program Services | $117,219 | ProgramServicesAmt |
| Management And General | $5,568 | ManagementAndGeneralAmt |
| Fundraising | $9,740 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $18,434 | TotalAmt |
| Program Services | $11,568 | ProgramServicesAmt |
| Management And General | $5,896 | ManagementAndGeneralAmt |
| Fundraising | $970 | FundraisingAmt |
Other Expenses OtherExpensesGrp (3 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| PRECLINICAL CONSORTIUM | $2,373,030 | $2,373,030 | ||
| NHD BIOSAMPLE REPOSITOR | $376,012 | $376,012 | ||
| DUES AND SUBSCRIPTIONS | $48,319 | $30,012 | $11,146 | $7,161 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,331 | TotalAmt |
| Program Services | $3,603 | ProgramServicesAmt |
| Management And General | $638 | ManagementAndGeneralAmt |
| Fundraising | $3,090 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,133,802 | TotalAmt |
| Program Services | $7,267,682 | ProgramServicesAmt |
| Management And General | $632,658 | ManagementAndGeneralAmt |
| Fundraising | $1,233,462 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,485,780 | BOYAmt |
| EOY | $4,564,636 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $706,764 | BOYAmt |
| EOY | $0 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,754,156 | BOYAmt |
| EOY | $2,511,408 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $119,421 | BOYAmt |
| EOY | $136,853 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $337,110 | BOYAmt |
| EOY | $609,612 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $804,621 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $540,963 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $634,558 | BOYAmt |
| EOY | $263,658 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,298,765 | BOYAmt |
| EOY | $1,241,279 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,918,147 | BOYAmt |
| EOY | $8,696,728 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,254,701 | BOYAmt |
| EOY | $18,024,174 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $725,038 | BOYAmt |
| EOY | $765,230 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $194,359 | BOYAmt |
| EOY | $362,695 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $969,191 | BOYAmt |
| EOY | $847,843 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,888,588 | BOYAmt |
| EOY | $1,975,768 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,428,055 | BOYAmt |
| EOY | $9,404,732 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,938,058 | BOYAmt |
| EOY | $6,643,674 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $15,366,113 | BOYAmt |
| EOY | $16,048,406 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $17,254,701 | BOYAmt |
| EOY | $18,024,174 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $673,518 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $8,775 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $5,769,053 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,016,851 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $6,496,698 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $6,734,724 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $6,119,119 | CurrentTaxYearAmt |
| Total | $32,136,445 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $5,769,053 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,016,851 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $6,496,698 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $6,734,724 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $6,119,119 | CurrentTaxYearAmt |
| Total | $32,136,445 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $6,506,298 | SubstantialContributorsTotAmt |
| Public Support Total170 | $25,630,147 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,809 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,382 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $36,732 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $52,809 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $106,512 | CurrentTaxYearAmt |
| Total | $202,244 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus3 Years | $15,492 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $995 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,482 | CurrentTaxYearMinus1YearAmt |
| Total | $21,969 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $32,360,658 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $13,763,563 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.79200 | PublicSupportCY170Pct |
| Public Support PY170 | 0.83130 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $1,113 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $205,421 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $206,534 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $7,729,925 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $7,936,459 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $546,823 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $136,706 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $550,968 | CurrentYearMinus3Amt |
| Current Year Minus2 | $515,868 | CurrentYearMinus2Amt |
| Current Year Minus1 | $516,285 | CurrentYearMinus1Amt |
| Current Year | $546,823 | CurrentYearAmt |
| Total | $2,129,944 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,194,916 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $162,771 | CurrentYearMinus3Amt |
| Current Year Minus2 | $188,741 | CurrentYearMinus2Amt |
| Current Year Minus1 | $239,593 | CurrentYearMinus1Amt |
| Current Year | $206,534 | CurrentYearAmt |
| Total | $797,639 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $137,742 | CurrentYearMinus3Amt |
| Current Year Minus2 | $128,967 | CurrentYearMinus2Amt |
| Current Year Minus1 | $129,071 | CurrentYearMinus1Amt |
| Current Year | $136,706 | CurrentYearAmt |
| Total | $532,486 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $798,729 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $1,395 | CurrentYearMinus3Amt |
| Current Year Minus2 | $1,345 | CurrentYearMinus2Amt |
| Current Year Minus1 | $4,886 | CurrentYearMinus1Amt |
| Current Year | $1,113 | CurrentYearAmt |
| Total | $8,739 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $6,759,871 | BeginningYearBalanceAmt |
| Contributions | $420,895 | ContributionsAmt |
| Investment Earnings Or Losses | $979,173 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $246,000 | OtherExpendituresAmt |
| Administrative Expenses | $61,185 | AdministrativeExpensesAmt |
| End Year Balance | $7,852,754 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,821,187 | BeginningYearBalanceAmt |
| Contributions | $554,586 | ContributionsAmt |
| Investment Earnings Or Losses | $671,714 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $239,000 | OtherExpendituresAmt |
| Administrative Expenses | $48,616 | AdministrativeExpensesAmt |
| End Year Balance | $6,759,871 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,500,387 | BeginningYearBalanceAmt |
| Contributions | $141,816 | ContributionsAmt |
| Investment Earnings Or Losses | $812,509 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $572,625 | OtherExpendituresAmt |
| Administrative Expenses | $60,900 | AdministrativeExpensesAmt |
| End Year Balance | $5,821,187 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $6,711,748 | BeginningYearBalanceAmt |
| Contributions | $68,423 | ContributionsAmt |
| Investment Earnings Or Losses | -$860,036 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $238,000 | OtherExpendituresAmt |
| Administrative Expenses | $181,748 | AdministrativeExpensesAmt |
| End Year Balance | $5,500,387 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,893,521 | BeginningYearBalanceAmt |
| Contributions | $132,476 | ContributionsAmt |
| Investment Earnings Or Losses | $1,053,588 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $333,813 | OtherExpendituresAmt |
| Administrative Expenses | $34,024 | AdministrativeExpensesAmt |
| End Year Balance | $6,711,748 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.85683 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.14317 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0.00000 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | Yes (1) | EndowmentsHeldRelatedOrgInd |
| Related Org List Sch R | Yes (1) | RelatedOrgListSchRInd |
Leasehold Improvements LeaseholdImprovementsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $442,623 | OtherCostOrOtherBasisAmt |
| Depreciation | $231,371 | DepreciationAmt |
| Book Value | $211,252 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $281,726 | OtherCostOrOtherBasisAmt |
| Depreciation | $229,320 | DepreciationAmt |
| Book Value | $52,406 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $80,272 | OtherCostOrOtherBasisAmt |
| Depreciation | $80,272 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $263,658 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (3 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| NET ASSETS OF AFFILIATE | $7,852,754 |
| OPERATING LEASE RIGHT-OF-USE ASSET | $334,625 |
| DUE FROM AFFILIATE | $509,349 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $8,696,728 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| OPERATING LEASE LIABILITY | $846,003 |
| DUE FROM RELATED PARTY | $1,840 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $847,843 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $9,826,095 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $8,775 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $10,000 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $18,775 | RevenueNotReportedAmt |
| Revenue Subtotal | $9,807,320 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $9,807,320 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $9,143,802 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $10,000 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $10,000 | ExpensesNotReportedAmt |
| Expenses Subtotal | $9,133,802 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $9,133,802 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART V, LINE 4: | FormAndLineReferenceDesc |
| Explanation | THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ENDOWMENT FUNDS INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUND AND ONE BOARD-DESIGNATED ENDOWMENT FUND. AS REQUIRED BY U.S. GENERALLY ACCEPTED ACCOUNTING PRINCIPLES, NET ASSETS ASSOCIATED WITH ENDOWMENT FUNDS ARE CLASSIFIED AND REPORTED BASED ON THE EXISTENCE OR ABSENCE OF DONOR-IMPOSED RESTRICTIONS. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND AND GREENLAND) | 3 | 0 | GRANTS TO RECIPIENTS LOCATED IN THE REGION | RESEARCH GRANTS | $253,244 |
| SUB-SAHARAN AFRICA | 1 | 0 | GRANTS TO RECIPIENTS LOCATED IN THE REGION | GRANT TO CLOSE A GLOBAL ALLIANCE OFFICE | $83,183 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 4 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 4 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $336,427 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $336,427 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | RESEARCH ON TUBEROUS SCLEROSIS COMPLEX | $56,250 | WIRE TRANSFER | $0 |
| SUB-SAHARAN AFRICA | RESEARCH ON TUBEROUS SCLEROSIS COMPLEX | $83,183 | WIRE TRANSFER | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM | RESEARCH ON TUBEROUS SCLEROSIS COMPLEX | $193,234 | WIRE TRANSFER | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Org | 3 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | GRANTEE ORGANIZATIONS ARE EXPECTED TO FILE ANNUAL PROGRESS REPORTS TO OUTLINED GRANT GOALS AND MILESTONES. THESE REPORTS ARE REVIEWED BY A COMMITTEE OF PEERS. THIS COMMITTEE MAKES DETERMINATIONS BASED ON QUALITY OF WORK TO GOALS AND IF THE GRANTEE WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | STEP FORWARD TO CURE TSC | Event1Nm |
| Gross Receipts Event1 | $799,948 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $799,948 | CharitableContriEvent1Amt |
| Non Cash Prizes Event1 | $25,340 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $14,267 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $12,325 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $11,401 | EntertainmentEvent1Amt |
| Event2 | COMEDY FOR A CURE | Event2Nm |
| Gross Receipts Event2 | $372,009 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $306,273 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $65,736 | GrossRevenueEvent2Amt |
| Rent Facility Costs Event2 | $17,231 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $74,250 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $1,500 | EntertainmentEvent2Amt |
| Other Events Total | 1 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $171,691 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $171,691 | CharitableContriOtherEventsAmt |
| Non Cash Prizes Other Events | $1,524 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $683 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $2,956 | FoodAndBeverageOtherEventsAmt |
| Gross Receipts Total | $1,343,648 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,277,912 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $65,736 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $26,864 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $32,181 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $89,531 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $12,901 | EntertainmentTotalEventsAmt |
| Direct Expense Summary Events | $161,477 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$95,741 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (11 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|
| BAYLOR COLLEGE OF MEDICINE | ||||||||
| PO BOX 301207 | DALLAS | TX | 70690 | 741613878 | 501(C)(3) | $56,250 | $0 | RESEARCH GRANT |
| EMORY UNIVERSITY | ||||||||
| PO BOX 935084 | ATLANTA | GA | 31193 | 580566256 | 501(C)(3) | $75,000 | $0 | RESEARCH GRANT |
| NORTHWESTERN UNIVERSITY | ||||||||
| 633 CLARK ST ROOM G547 | EVANSTON | IL | 60208 | 362167817 | 501(C)(3) | $75,000 | $0 | RESEARCH GRANT |
| UNIVERSITY OF CALIFORNIA IRVINE | ||||||||
| 228 ALDRICH HALL | IRVINE | CA | 92697 | 952226406 | 501(C)(3) | $56,250 | $0 | RESEARCH GRANT |
| UNIVERSITY OF MASSACHUSETTS | ||||||||
| 55 LAKE AVENUE NORTH SUITE S1-859 | WORCESTER | MA | 01655 | 542084125 | 501(C)(3) | $75,000 | $0 | RESEARCH GRANT |
| UNIVERSITY OF TEXAS DALLAS | ||||||||
| 800 WEST CAMPBEL ROAD SP2 27 | RICHARDSON | TX | 75080 | 751305566 | 501(C)(3) | $56,250 | $0 | RESEARCH GRANT |
| NATIONAL ORGANIZATION FOR RARE DISORDERS | ||||||||
| DEPT 5430 PO BOX 4110 | WOBURN | MA | 01888 | 133223946 | 501(C)(3) | $150,000 | $0 | TSC TRAVEL AND LODGING ASSISTANCE PROGRAM |
| BOSTON CHILDREN'S HOSPITAL | ||||||||
| PO BOX 414413 | BOSTON | MA | 02241 | 042774441 | 501(C)(3) | $100,579 | $0 | RESEARCH GRANT |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA | ||||||||
| PO BOX 957089 | LOS ANGELES | CA | 90095 | 956006143 | 501(C)(3) | $18,750 | $0 | RESEARCH GRANT |
| CLEMSON UNIVERSITY | ||||||||
| PO BOX 931616 | ATLANTA | GA | 31193 | 576000254 | 501(C)(3) | $19,866 | $0 | RESEARCH GRANT |
| CINCINNATI OF CHILDREN'S HOSPITAL | ||||||||
| 3333 BURNET AVE | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $18,750 | $0 | RESEARCH GRANT |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 11 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE TSC ALLIANCE HAS FUNDED $44 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TSC ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TSC ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TSC ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS AND TSC RESEARCH GRANTS. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: 1. A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC AS WELL AS CONSUMERS REVIEW ALL GRANT APPLICATIONS FOR SCIENTIFIC MERITS, RELEVANCY TO THE FUNDING PRIORITIES OF THE ORGANIZATION AND WITH A FOCUS ON UNDERSTANDING THE MECHANISMS OF TSC AND/OR THE DEVELOPMENT OF TREATMENTS AND THERAPIES FOR THE MANIFESTATIONS OF THE DISEASE. 2. THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS THEN REVIEWS THE GRANT REVIEW COMMITTEE'S CONCLUSIONS AND MAKES FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS. 3. THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANTS. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Form990 Of Other Organizations | Yes (X) | Form990OfOtherOrganizationsInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | Yes (1) | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | Yes (1) | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (4 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KARI LUTHER ROSBECK | ||||||||||||||
| PRESIDENT & CEO | $227,552 | $0 | $27,405 | $0 | $0 | $0 | $7,997 | $0 | $24,414 | $0 | $287,368 | $0 | $0 | $0 |
| STEVEN ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $229,467 | $0 | $26,808 | $0 | $0 | $0 | $7,895 | $0 | $23,177 | $0 | $287,347 | $0 | $0 | $0 |
| DEAN RAGER-AGUIAR | ||||||||||||||
| VICE PRESIDENT, TRANSLATIO | $169,526 | $0 | $22,254 | $0 | $0 | $0 | $6,144 | $0 | $27,382 | $0 | $225,306 | $0 | $0 | $0 |
| LISA MOSS | ||||||||||||||
| VICE PRESIDENT, DONOR RELA | $120,281 | $0 | $15,726 | $0 | $0 | $0 | $4,401 | $0 | $24,439 | $0 | $164,847 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 5 | KARI LUTHER ROSBECK, STEVE ROBERDS, JAMIE SAYLOR, DEAN RAGER-AGUIAR, GAIL SAUNDERS, HEATHER RADTKE, AND LISA MOSS, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE. |
| PART I, LINE 6 | KARI LUTHER ROSBECK, STEVE ROBERDS, JAMIE SAYLOR, DEAN RAGER-AGUIAR, GAIL SAUNDERS, HEATHER RADTKE, AND LISA MOSS, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE. |
Schedule M IRS990ScheduleM
Other Non Cash Contri Table OtherNonCashContriTableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Desc | MEDICAL EQUIPMENT | Desc |
| Contribution | 1 | ContributionCnt |
| Noncash Contributions Rpt F990 | $34,500 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE M, PART I, LINE 25 | FormAndLineReferenceDesc |
| Explanation | THE NUMBER REPORTED IN COLUMN (B) REPRESENTS THE NUMBER OF CONTRIBUTIONS. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 6 | MEMBERSHIP IN THE CORPORATION IS AVAILABLE TO ANY PERSON WHO SUBSCRIBES TO THE PURPOSES AND OBJECTIVES OF THE CORPORATION, WITHOUT REGARD TO RACE, RELIGION, GENDER, SEXUAL ORIENTATION, AGE, COLOR, NATIONAL ORIGIN, OR MENTAL OR PHYSICAL HANDICAP OR DISABILITY. THERE IS NO LIMIT TO THE NUMBER OF MEMBERS IN THE CORPORATION. 1) THERE MAY BE ONE OR MORE CLASSES OF MEMBERSHIP AS DETERMINED BY THE BOARD. 2) MEMBERSHIP IS NOT TRANSFERABLE OR ASSIGNABLE. |
| FORM 990, PART VI, SECTION A, LINE 7A | THE TSC ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TSC ALLIANCE MEMBERSHIP PROGRAM ALLOWS INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2025. ANYONE CAN BE A MEMBER AT NO COST. |
| FORM 990, PART VI, SECTION B, LINE 11B | THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS' AUDIT COMMITTEE. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED, THE AUDIT COMMITTEE VOTES WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE FINANCE AND EXECUTIVE COMMITTEES. THE FINANCE AND EXECUTIVE COMMITTEES PERFORM THE FINAL REVIEW AND THEN VOTE WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD PRIOR TO ITS FILING WITH THE IRS. |
| FORM 990, PART VI, SECTION B, LINE 12C | ANNUALLY EACH MEMBER OF THE BOARD OF DIRECTORS WILL RECEIVE NOTICE OF THE ORGANIZATION'S CONFLICT OF INTEREST STATEMENT. EACH MEMBER WILL BE PROVIDED WITH A STATEMENT TO MAKE DISCLOSURE OF ANY POTENTIAL CONFLICT OF INTEREST. IF DURING THE COURSE OF THE YEAR A POTENTIAL CONFLICT OF INTEREST ARISES THAT HAS NOT PREVIOUSLY BEEN DISCLOSED, THE BOARD MEMBER WILL MAKE WRITTEN NOTICE OF A POTENTIAL CONFLICT OF INTEREST AND RECUSE HIMSELF OR HERSELF FROM ANY DISCUSSIONS AND VOTES IN CONNECTION WITH THE ISSUE IDENTIFIED. ANY TIME A MEMBER IS RECUSED FROM DISCUSSION ON AN ISSUE, THE MINUTES OF COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TSC ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS, AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION. |
| FORM 990, PART VI, SECTION C, LINE 19 | ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST. |
| FORM 990, PART XII, LINE 2C: | THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD NO 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | SUPPORT THE MISSION OF THE TSC ALLIANCE | PrimaryActivitiesTxt |
| Legal Domicile State | MD | LegalDomicileStateCd |
| Exempt Code Section | 501(C)(3) | ExemptCodeSectionTxt |
| Public Charity Status | LINE 12B, II | PublicCharityStatusTxt |
| Direct Controlling NA | N/A | DirectControllingNACd |
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | Yes (1) | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | Yes (1) | SharingOfFacilitiesInd |
| Paid Employees Sharing | Yes (1) | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
Transactions Related Org TransactionsRelatedOrgGrp
Other Organization Name OtherOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $246,000 | InvolvedAmt |
| Method Of Amount Determination | ACTUAL CASH RECEIVED | MethodOfAmountDeterminationTxt |
Comments